Anyone else had thyroid tissue regrowth after a total thyroidectomy?

I had a large malignant hurthel cell (6.5 Cm) removed as well as my entire thyroid and over 16 lymph nodes back in October 22 with RAI treatment in December. I was told the RAI is really to try and kill any remaining thyroid tissue that may be left. I was told they don’t have a lot of success killing hurthel cell with RAI but they like to try. I am guessing that is why it’s so important to get checkups and scans every 6 months. Is the same info your doctor told you?

Hi all, not sure if this thread is active but just wanted to join to share my experience. In 2011 I had a total thyroidectomy. Late last year I noticed a lump on the right side of my neck and went for ultrasounds and got referred to ENT. After 7 months I was seen and sent for more ultrasounds and biopsys as they were concerned the findings on the 2nd ultrasound might be sinister due to growth. It all moved quite quickly, I ended up going for a MRI under contrast and after many meetings it was confirmed the lumps discovered were benign (thankfully!) and that going off my surgical notes it's looking like it's the parathyroid gland growing that's been implated into the right sternomastoid in 2011 along with thyroid tissue regrowing in the same area at the side of the neck as well as tissue growing back where the thyroid used to be. I've been referred from my ENT consultant to another hospital and have an appointment next week with a general surgeon/endocrine surgeon at their Endocrine clinic. Not really sure what to expect as haven't been told why this has been done just that I'm being sent for him to review the case.. Will this need to be removed? Or will they just monitor it?

I shared this in a previous post, but briefly, I had a similar situation where 20 years after a total thyroidectomy I found a lump in my neck. Several biopsies came back inconclusive, and my surgeon was sure it was benign. But after surgery they found solid Hurthle Cell cancer, which can't be detected until the mass is removed.

Thank you for your response. I’m not sure what to push for now as they’ve said based on biopsy’s and extensive scans they’re sure it’s benign and they think the lump is just the parathyroid gland implanted into the side of the neck along with some thyroid tissue.. I have an appointment with an endocrine surgeon soon and not overly sure what to expect. I have a feeling they’ll say to just monitor the situation as they said removal would have its own implications after initially saying that whatever it was couldn’t stay due to where it was growing.

So confusing and scary! I only have my own experience to share. Hopefully someone else has more info. I would say to keep doing research, and get another opinion depending on where you are and what you find.

Very! My heads all over, it’s been very fast paced with all the scans etc over the past few weeks after having to wait from December last year till June this year to be initially seen. I guess I will be getting a second opinion soon as the surgeon I am seeing is at another hospital and has been asked to review my case.

Hope you are all ok now? Thanks again for sharing your experience

I had IRT after the surgery, though Hurthle Cell is not very receptive to that. Then thyroglobulin blood test and ultrasound every 3 months for the first year. So far, all is good.

Maybe you can ask if it would possible to have radiofrequecby ablation? …. Anything that shrinks a benign growth sounds like a less invasive way to deal with things. I’m not a fan of surgery and removal unless I absolutely MUST have something removed. Good luck!

Thank you. One minute I’m told they can’t leave it in, the next minute they’re saying they might monitor it rather than removing it because of it being awkward surgery. I will see someone new who I’ve been referred to from my ENT consultant who’s an Endocrine surgeon so I will definitely ask if it’s possible to do that. I really really don’t want to have to go through surgery/removal of something else again so would really prefer something like that. Thank you ☺️

I had a similar experience with Hurthle cell tumors and thyroid surgically removed 20 + years ago and later tumors regrew. Surgically removed again about 10 years ago and so far no problem. Hurthle cell tumors seem to be a especially bad type of thyroid cancer.